When Life Changes You

It doesn’t make me laugh, so I won’t say it’s funny. It’s actually interesting how I find myself becoming emotionally affected by something that’s been slowly changing my life for about 20 years.

I walked four miles at top speed most days. At first it wasn’t much, but I began to notice a simple scuff of the toe once in a while. I turned into a task to see how many scuffs I could avoid. Most days were good. I figured it may have been the weather, or the onset of a cold that affected my walk, but eventually the scuffs were winning.

Deciding to move in ’94 was emotionally hard for me because I had come to know a good deal of people in the neighborhood. After the closing and during the waiting I didn’t feel well, I felt anxious and found that my hair was thinning. I don’t remember time periods but I began to feel better and the hair thickened. Well, I was anxious and a bit depressed.

Soon the time had come to sign the kids up in a new school. I then found myself, how should I say, in distress regarding the lowest region of my digestive system. One doctor couldn’t find anything wrong and suggested more fiber. I found myself at a lovely number on the scale after five miserable weeks. So a different doctor gave me a pill and I eventually became ‘regular’. Okay, so I was nervous.

We were soon settling into a home which had formally been owned by people who like different shades of white. The woman’s hobbies were scrubbing grout and washing windows monthly. She probably unscrewed and wiped down each light bulb too. So, there I was with a young girl and boy ready to make it homey. I unintentionally tried to keep the house as I had found it, but that didn’t make me a happy. I developed bladder spasms. Wholly Mother of Pearl this went on for a long time until my final urologist gave me a pill to relax the bladder. I then eased off regarding the house and decided to live in it. I was just overwhelmed I guess.

We live across the street from Stoney Creek Metro Park and each day I walked before work. My speed walks had slowed. I watched for birds and sketched wild flowers. I found myself becoming quite familiar with both. One cold day an ache occurred in a calf, and then cold spots and soreness came on regardless of the temperature or my activity. I was referred to different specialists for muscles and bones.

I had a body scan which showed a scar on my thyroid. Well, that explained feeling miserable the hair loss years before. Then I had a series of MRIs and the pleasure of a spinal tap. Days later the Neurologist simply told me I had MS, spoke other words, and left. I found myself at the nurses counter staring. I spotted my doctor and asked to speak to him. We stepped aside and I ripped him a new one, told him that the he was much too detached, leaving me sitting there as if I may as well have a cold and in the mean time what do I do now! He put his hand on my shoulder, apologized, showed good ‘bed side manner’ and told me to call him any time at all, and I did. I wanted a second opinion. I was sent to Henry Ford where questions and answers confirmed the diagnosis for this doctor. I had begun to have my fill of doctors.

Word came to us of a MS specialist at U of M. Once there and a ten minute of talk and a review of the files he told me that I didn’t have MS and sent me over to a Dr. Fink, Director of the Neurogenetic Disorders Program. I actually walked over to his offices that day! Dr. Fink asked many questions and had me perform tasks regarding balance and the ability to feel vibrations. He had no doubt that it was Hereditary Spastic Paraplegia, which affects the muscles below the waste.

So it took years to find out that I wasn’t extremely frustrated, nervous, tense, or overwhelmed. I was developing a disease. Damn.
After all this time I haven’t let it get to me too much until this year. It’s difficult to adapt to something that is progressive. Walking has become much harder and balance is extremely difficult, but I won’t stop. I get bruised but I won’t stop.

Recently, coming home from a movie, I found myself overcome by a happy energetic ending. The actress ran blocks and blocks and up a flight of stairs. I broke down. I was angry that I broke down, but I was angry that I can’t run, none the less walk, without help. I know others has it worse, but when it’s your life that changes, it makes a difference in your world.
I travel the earth in books, try to write, treasure people and conversation, work very hard at the gym, and enjoy the experiences I find in movies.

I’ve stopped apologizing for being slow and I’m learning to ask for help. In December I wish to attend Noel Night and visit the museums and Library while Woodward is closed. However I can’t do it without the help of a wheel chair. I’m finding that hard to deal with. However, if I’m able to stand up and be heard when I better start listening to those who care and want to help.

11/23/10

4:00 p.m.